Protect Newborn Genetic Privacy Rights

Consent for Newborn Genetic Screening Required.

Subdivision 1. Parental Consent Requirements. Parents are permitted to refuse newborn genetic screening or to choose private newborn genetic screening. Notwithstanding any other state or federal law or regulation, prior to conducting newborn genetic screening, a health care facility or health care provider must receive the express, separate, written, voluntary, informed consent of the parents or guardian of a newborn child. A general consent permitting treatment signed by the parents or guardian at admission to a facility does not fulfill this requirement. This consent requirement cannot be waived for any reason.

Subd. 2. Limitation on Blood Spot Collection. The Commissioner of Health shall limit the number of bloodspots and the quantity of blood drawn from a newborn for newborn genetic screening to the amount needed to conduct newborn screening on the child. Additional blood for prospective purposes shall not be collected without the express, separate, written, voluntary, informed consent of the parent or guardian of the newborn child.

Subd. 2. Definition. For purposes of this section, newborn screeningmeans

Consent for Retention, Sharing and Use of Newborn Dried Blood Spots Required.

Subdivision 1. Parental Consent Requirements. Notwithstanding any other state or federal law or regulation, the newborn bloodspots taken for newborn genetic screening may not be retained by the Commissioner of Health or any other facility longer than three weeks after the test results have been received and must be destroyed unless express, separate, written, voluntary, informed consent is received. The consent form must use easy to understand language that does not threaten to penalize the parents or claim that the child will be hurt in any way for refusing to consent to the retention of the newborn bloodspots. If parents consent to the retention of newborn bloodspots, the bloodspots may not be disseminated, shared, analyzed, or used for test development, public health studies, newborn studies, genetic or medical research, forensics, law enforcement or any other purpose without the express, separate, written, voluntary, informed consent of the parent or guardian, or the express, separate, written, voluntary, informed consent of the adult who was a minor at the time the newborn dried bloodspots were retained. A general consent permitting treatment signed by the parents or guardian for a home birth or at admission to a birthing or other health care facility does not fulfill this requirement. These consent requirements cannot be waived for any reason.

health program of screening in infants shortly after birth for conditions that are treatable, but not

is a public

clinically evident in the newborn period.

Citizens’ Council for Health Freedom • CCHFREEDOM.ORG • info@cchfreedom.org • 651-646-8935

Subd. 2. Definition. For purposes of this section, “newborn dried blood spots” means the

Consent for Retention, Sharing and Use of Newborn Genetic Screening Test Results

Subdivision 1. Parental Consent Requirements. Notwithstanding any other state or federal law or regulation, the test results of newborn genetic screening may not be retained by the Commissioner of Health or any other facility longer than three weeks from the testing, and must be destroyed unless express, separate, written, voluntary, informed consent is received. The consent form must use easy to understand language that does not threaten to penalize the parents or claim that the child will be hurt in any way for refusing to consent to the retention of newborn genetic screening test results. If parents consent to the retention of newborn screening test results, the test results may not be disseminated, shared, analyzed, or used for test development, public health studies, newborn studies, genetic or medical research, forensics, law enforcement or any other purpose without the express, separate, written, voluntary, informed consent of the parent or guardian, or the express, separate, written, voluntary, informed consent of the adult who was a minor at the time the newborn screening test results were retained. A general consent permitting treatment signed by the parents or guardian for a home birth or at admission to a birthing or other health care facility does not fulfill this requirement. These consent requirements cannot be waived for any reason.

The Newborn Screening Saves Lives Act of 2014 that Congress passed and was signed into law in December 2014 and sunset January 19, 2017, the last day of the Obama presidency:

No consent = unconstitutional (Michigan lawsuit): https://pacer.courtdrive.com/ecf.mied.uscourts.gov/doc1/097112056867/caseid=327162__de_seq_num=627__magic_num=77058934

blood that is collected unto a special filter paper y a health care worker from the heel of a

newborn at home or at a health care facility and submitted for newborn genetic screening.

Citizens’ Council for Health Freedom • CCHFREEDOM.ORG • info@cchfreedom.org • 651-646-8935

 

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